6.1 European Co-ordination Forum for the Council of Europe Disability Action Plan 2006-2015 (CAHPAH) –Draft Recommendation CM/Rec(2009)... of the Committee of Ministers to member states on ageing and disability in the 21st century: sustainable frameworks to enable greater quality of life in an inclusive society

Item to be prepared by the GR-SOC at its meeting of 30 June 2009——————————————

The Committee of Ministers,

Considering that the aim of the Council of Europe is to achieve greater unity between its members and that this aim may be pursued, inter alia, by the adoption of common rules in the disability policy field for the purpose of promoting the protection of political, civil, social and cultural rights;

Reaffirming the universality, indivisibility and interdependence of all human rights and fundamental freedoms, and the need to guarantee their full enjoyment, without any discrimination, by people with disabilities, regardless of their age, gender, their belonging to a minority group or of the type, origin or severity of their condition;

Considering that failure to promote the rights of citizens with disabilities and to ensure equality of opportunities is a violation of their human dignity;

Convinced that ensuring equal opportunities for members of all groups in society contributes to securing democracy and social cohesion;

Noting that the progressive ageing of people with disabilities, particularly of those requiring more intensive support, presents new challenges for societies across Europe, and requires innovative approaches to meet these challenges across a wide range of policy and service areas;

Reiterating the need to closely involve ageing people with disabilities and older people with disabilities2 in decisions affecting their lives;

Having regard to the Convention for the Protection of Human Rights and Fundamental Freedoms (ETS No. 5);

Having regard to the revised European Social Charter (ETS No. 163), in particular Article 15, and the Additional Protocol to the European Social Charter Providing for a System of Collective Complaints (ETS No. 158);

Bearing in mind the Recommendation Rec(2006)5 on the Council of Europe Action Plan to promote the rights and full participation of people with disabilities in society: improving the quality of life of people with disabilities in Europe 2006-2015;

Taking note of the final declaration of the 2nd European Conference of Ministers responsible for Integration Policies for People with Disabilities, held in 2003 in Malaga, Spain, entitled “Progressing towards full participation as citizens”;

Taking note of the St. Petersburg Declaration, adopted at the European Conference “Improving the quality of life of people with disabilities in Europe: participation for all, innovation, effectiveness”, St. Petersburg, Russian Federation, 21-22 September 2006;

Taking into account the final declaration of the 1st European Conference of Ministers responsible for Social Cohesion held in 2009 in Moscow, Russian Federation, entitled “Investing in social cohesion – investing in stability and the well-being of society”;

Welcoming Recommendation 1854 (2009) and Resolution 1642 (2009) of the Parliamentary Assembly of the Council of Europe on access to rights for people with disabilities and their full and active participation in society;

Bearing in mind the achievements of the Partial Agreement in the Social and Public Health Field in disability-related matters, and in particular, its Resolution ResAP(2007)3 on achieving full participation through Universal Design;

Referring to the work carried out by the European Co-ordination Forum for the Council of Europe Disability Action Plan 2006-2015 (CAHPAH) and by its subordinate body, the Committee of Experts on ageing of people with disabilities and older people with disabilities (CAHPAH-VPH), namely the report entitled “Enhancing rights and inclusion of ageing people with disabilities and older people with disabilities: a European perspective”;

Taking into account the proceedings of the European Conference entitled “Protecting and promoting the rights of persons with disabilities in Europe: towards full participation, inclusion and empowerment” under the aegis of the Swedish Chairmanship of the Committee of Ministers of the Council of Europe and Presidency of the Nordic Council of Ministers, held in Strasbourg, France, on 29 and 30 October 2008, and of the Conference on Women and Disabilities under the aegis of the Spanish Chairmanship of the Committee of Ministers of the Council of Europe, held in León, Spain, on 12 and 13 February 2009;

Taking due account of the United Nations Convention on the Rights of Persons with Disabilities (2006);

Having regard to the International Classification of Functioning, Disability and Health (ICF) (2001) of the World Health Organization;

Taking note of the International Plan of Action on Ageing, adopted by the United Nations Second World Assembly on Ageing, held in Madrid, Spain, from 8 to 12 April 2002;

Welcoming the Graz Declaration on Disability and Ageing, adopted at the European Conference on Ageing and Disability – Disabled People are Ageing, Ageing People are Getting Disabled, held in Graz, Austria, on 8 and 9 June 2006, as a particularly important contribution to the Europe-wide commitment to enhancing the rights and removing barriers to inclusion of ageing and older people with disabilities;

Taking note of the outcomes of the 1st International Conference on Bridging Knowledge in Long-term Care and Support: Crossing Boundaries between Ageing and Disability, held in Barcelona, Spain, from 5 to 7 March 2009,

Recommends that the governments of the Council of Europe member states, with due regard for their own national, regional or local structures and respective responsibilities, contribute to the creation of sustainable frameworks to enable greater quality of life in an inclusive society for ageing people with disabilities and older people with disabilities, and to this end:

a. take account, as appropriate, in their policies, legislation and practice, of the principles set out in the appendix to this recommendation and implement the measures advocated therein;

b. promote the implementation of this recommendation in areas which are not the direct responsibility of public authorities, but where they have a certain influence or play a role;

c. involve non-governmental organisations of or representing ageing people with disabilities and older people with disabilities in the implementation and monitoring of the measures advocated in this recommendation;

d. ensure the widest possible dissemination of this recommendation to all parties concerned, for example through awareness-raising campaigns and co-operation with civil society.

Appendix to Recommendation CM/Rec(2009)…

Introduction

The expressions “ageing people with disabilities” and “older people with disabilities” refer to two distinct but related groups of people. The first group refers to people who grow old having experienced a disability for much of their lives, sometimes from birth. For the second group, disability is first experienced at a relatively advanced age.

The recommendations set out below address the needs of both groups and are based on the analysis of Council of Europe member states’ practices in service provision for ageing people with disabilities and older people with disabilities. The analysis is presented in the report entitled “Enhancing rights and inclusion of ageing people with disabilities and older people with disabilities: a European perspective”, which looks into various frameworks affecting service provision, and, hence, the quality of life of ageing people with disabilities and older people with disabilities.

Legal framework:with special reference to promoting autonomy and an independent life; enhancing the quality of services; ensuring equal access to social services and legal protection.

Financial framework: including rights and funding for services, diversification of sources of finance, and the challenge of financial restraints.

Participatory framework:concerning involvement at different stages in planning and implementation of policies, programmes and services.

Operational framework:covering a range of measures and services to promote autonomy and independence for people with disabilities, with emphasis on innovation and good practice.

Individual framework:including measures to prepare people with disabilities for change and transition; needs assessment and service planning for individuals; and measures to guarantee rights to be fully informed and consulted.

General considerations

The recommendations below take into account and are informed by important contextual consideration related to enhancing rights for ageing people with disabilities and older people with disabilities and improving services intended for them. This context includes the following points.

Demography. The global trend towards ageing societies is well established, with increasing proportions of ageing people with disabilities and older people with disabilities. There is a history of neglect of the needs and interests of these two groups of citizens in most societies.

Different starting points and resource constraints. Member states are at different stages of economic and social development, which affects their progress towards ensuring full rights and support services for people with disabilities. This is recognised in the Recommendation Rec(2006)5 on the Council of Europe Action Plan to promote the rights and full participation of people with disabilities in society: improving the quality of life of people with disabilities in Europe 2006-2015 (“Council of Europe Disability Action Plan 2006-2015”), which states that member states should work towards implementation of the plan “within the framework of national financial resources” (item 1.5). Economic constraints are a significant reality for all countries in their progress towards the implementation of innovative social policies that ensure full rights and necessary services for people with disabilities.

Fundamental principles. These include: equality of opportunity for all citizens; non-discrimination; respect for and acceptance of disability as part of human diversity; the rights of people with disabilities to be fully involved in all decision-making processes that affect them; Universal Design, (environments, products, services accessible and usable by all), as referred to in the Council of Europe Disability Action Plan 2006-2015 and the United Nations Convention on the Rights of Persons with Disabilities.

Member states are invited to follow these recommendations in their implementation of the Council of Europe Disability Action Plan 2006-2015.

1. Promoting autonomy and an independent and active life

Ageing people with disabilities and older people with disabilities wish to live their lives with the maximum degree of freedom and autonomy, in human and physical environments and with support services that facilitate rather than hinder this style of life. The following recommendations work towards this objective.

1.1. The right to choice and self-determination should be respected. Any limitation of this fundamental right should only be in strictly defined circumstances.

1.2. The resources and personal potential of ageing and older people themselves should be recognised and incorporated in approaches to planning and providing support.

1.3. Because certain groups in society (such as women, minorities, migrants and people with different sexual orientation) are at risk of discrimination, it is particularly important to safeguard their equal rights when organising services and supporting autonomy and independent living.

1.4. Living arrangements (at home, in supported accommodation or in residential placement) should take account of the individuals’ wishes and needs.

1.5. Opportunities for rehabilitation and training should be provided when required to assist with independent living.

1.6. Preparation for life changes should be included in programmes for ageing people with disabilities.

1.7. The principle of life-long learning should be applied, regardless of the age and abilities of individuals. The continuous development of new skills helps to ensure personal autonomy, access and participation in society. Vocational training should be adapted to individuals’ needs.

1.8. Opportunities for active participation in all areas of life (for example, volunteer, work or political, cultural, social and professional activities) should be promoted by governments, recognising the knowledge and life experience of older people.

1.9. The loneliness and isolation of many people in these groups should be recognised and addressed through the creation of opportunities for active participation, such as in special volunteering schemes and membership of community centres.

1.10. More flexible retirement ages should be introduced, based on personal preferences and supported capacities.

1.11. Poverty among people with disabilities should be prevented through adequate social protection measures.

1.12. Free and accessible modern information systems and counselling – including via Internet – should be available to help individuals make their own decisions and organise their lives independently.

1.13. Housing, public buildings and transport should be made fully accessible and usable to ensure the highest possible degree of autonomy and freedom of movement for people with disabilities.

1.14. Public authorities should take necessary steps to ensure that transport is affordable and accessible.

1.15. Member states should take measures to step up data collection, increase research and compile statistics and data with regard to the needs of ageing people with disabilities and older people with disabilities.

1.16. The staff of support services should recognise, both in their training and in carrying out their professional duties, the rights of those concerned to personal autonomy and choice over types, location, timing and pace of the services to be provided, when assistance with living is required.

1.17. Relatives should receive material and other assistance to enable them to support a person with disabilities at home.

1.18. Procedures for evaluating and responding to people’s needs should be open to independent review and challenge.

1.19. Individuals’ personal potential and capabilities should always be included in holistic assessments of their needs and support requirements.

1.20. Regular periods of respite care should be available to provide family carers with a break from their responsibilities. This helps to ensure that home-based supported living can continue for as long as possible.

1.21. Services and their staff should respect and take into account the pace and rhythm of life of persons with whom they are working.

2. Enhancing the quality of services

Historically, the quantity and quality of community-based and residential support services in this field have been unsatisfactory, especially for people with learning disabilities. Older people with disabilities have suffered from a double disadvantage, as seen in their relatively low priority in health- and social-care policies and provision. People with disabilities themselves have been leaders in campaigns for change, driven by the widespread demand and pressure for higher quality public services. This has resulted in a paradigm shift, as those traditionally seen as passive “clients” and “patients” have progressively taken on more active and independent roles as users or consumers of services.

The following recommendations are designed to help enhance the quality of services in this field.

2.1. It is essential that services of both sufficient quality and quantity are provided.

2.2. Ageing people with disabilities and older people with disabilities should be fully and directly involved throughout the process of designing, implementing and evaluating services. Families, care providers and friends should also be involved in these processes, as appropriate.

2.3. So far as possible, services should be provided in a person’s home or community environment, rather than in a residential institution, and as close to a person’s home as possible.

2.4. When several different support services are required (for example, health and social care) they should be carefully co-ordinated or integrated to meet effectively the needs of the individual recipient.

2.5. Independent advisers should be available to enable people to cope with the complexity of services and direct them to appropriate resources, both services and professionals.

2.6. The quality of services depends heavily upon a workforce of sufficient quantity, with a range of personnel trained to meet the competence requirements of their particular roles and tasks. Their professionalism should then be recognised and properly remunerated.

2.7. When care providers (family members, paid personal assistants) are involved, appropriate training, information and support should be provided by public authorities or NGOs.

2.8. Services should be adequately financed as a necessary, if not sufficient, condition for them to be of satisfactory quality. Those responsible for funding should look to a variety of sources of financing, such as government funding, national and international NGOs, lotteries, contributions from business and contributions by service users themselves.

2.9. The right to good quality of services provided by all service providers should be defined and guaranteed in legislation, with means for redress clearly specified. Areas to be covered include: training and qualifications of staff, quality standards in specific services, systems for monitoring and inspection, and complaints systems.

2.10. Quality assurance and management systems and methods that take account of ethical considerations and professional standards are appropriate in this field and should be used in these services.

2.11. Quality holistic services should give proper attention to more than physical needs. They should, as appropriate, respond to people’s cultural, emotional, sexual and spiritual needs.

2.12. Quality is enhanced when services are individualised through means such as comprehensive individual action plans for each person with a disability.

2.13. As new technologies play an increasing role in support services, they should be fully accessible for ageing people with disabilities and older people with disabilities and form part of an integrated support system for the individual.

3. Enhancing equal access to services, including social services, and legal protection

It is evidently important for ageing people with disabilities and older people with disabilities to have full and equal access to legal protection and social services. Historically, this has not always been the case, with considerable variations between countries. Legal protection is particularly important, as without this people are vulnerable to local variations in policies and provision. Naturally, allcitizens should have equal access to services to which they are entitled by law, people with disabilities being no exception.

The following recommendations are designed to help enhance equal access to services, including social services, and legal protection.

3.1. People with disabilities should not suffer any reduction in their rights as they grow older or if they have already reached an older age.

3.2. People should be able to appoint one or more persons of trust (from their own family or not) prior to the occurrence of a legal incapacity connected with the worsening of a disability.

3.3. People with a disability should be protected from violence and abuse, for example through easy access to telephone hotlines and other systems.

3.4. Equal rights of access to social services and legal protection should be guaranteed throughout the whole country, including in countries with a federal structure.

3.5. Anombudsmansystem should be available, as experience has shown it can provide a valuable means of redress and protection for individuals who consider they have been denied equal access to social services and/or their right to legal protection. An ombudsman system may apply to all groups of citizens or there may be a system specifically for people with disabilities.

3.6. Any charges to service users should be at an affordable level to ensure that cost is not a barrier to accessing services necessary for those concerned.

3.7. Services and legal protection should be provided on an equal basis to all individuals, regardless of their lifestyle, origin, type or degree of disability, age, social or family origin, financial capacity and philosophical or religious convictions.

1 This document has been classified restricted at the date of issue; it will be declassified in accordance with Resolution Res(2001)6 on access to Council of Europe documents.

2 The expressions “ageing people with disabilities” and “older people with disabilities“ refer to two distinct but related groups of people. The first group refers to people who grow old having experienced a disability for much of their lives, sometimes from birth. For the second group, disability is first experienced at a relatively advanced age.